Celine Dion on Why She Shared Stiff-Person Syndrome Diagnosis

Celine Dion said she decided to publicly share her Stiff Person Syndrome diagnosis after months of feeling like she was lying to her fans by keeping the condition to herself.

In a new clip from the singer’s upcoming interview with Today’s Hoda Kotb, Dion admitted that she initially kept quiet about the rare neurological condition because she was still trying to understand and process what was happening with her health — and what her future might look like.

“What did you want me to say? ‘I have…’ what?” Dion said. “We did not know what was going on.”

Stiff Person Syndrome  — which has kept Dion from performing over the past several years — can cause stiffness in the body and limbs, as well as debilitating spasms. The upcoming primetime special will mark Dion’s first broadcast interview since she was diagnosed with SPS in 2022. But the singer said she first started experiencing symptoms of the disorder during her Taking Chances World Tour in 2008. 

“I did not take the time I should have stopped, take the time to figure it out,” Dion said, noting that at the time she started noticing the early signs of her condition, her late husband, René Angélil, was “fighting for his own life” while undergoing treatment for throat cancer. “I had to raise my kids, I had to hide. I had to try to be a hero.”

Revealing some of the fears that were racing through her head at the time, Dion said she was struggling while “feeling my body leaving me, holding on to my own dreams.”

Eventually, the condition continued progressing, and Dion felt like she had to tell the truth. “I could not do this anymore,” she said. “Lying for me, the burden was too much. Lying to the people who got me where I am today, I could not do it anymore.”

In a previous clip from Dion’s interview with Kotb, she described what performing with Stiff Person’s Syndrome felt like, saying it was like singing while “somebody is strangling you.”

“It’s like somebody is pushing your larynx, pharynx this way,” Dion continued, pressing her hand to her throat. “It’s like you’re talking like that, and you cannot go higher or lower.”

While Dion’s SPS diagnosis has kept her from performing, she has started to return to the public eye this year. In January, Prime Video announced they were prepping a new documentary, I Am: Celine Dion (set to premiere June 25), and then she appeared at the 2024 Grammy Awards to present Album of the Year.